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Monday, February 28, 2011

Rare Disease Day USA 2011

In the U.S., a rare disease is one that affects fewer than 200,000 people. This definition comes from the Orphan Drug Act of 1983 and is slightly different from the definition used in Europe. There are nearly 7,000 rare diseases affecting nearly 30 million Americans. In other words, as many as one in ten Americans are suffering from a rare disease.

Besides dealing with their specific medical problems, people with rare diseases struggle to get a proper diagnosis, find information, and get treatment. The rarity of their conditions makes medical research more difficult. For 2011, our focus is on disparities in access to services and treatment.

Mitochondrial Disease is considered a rare disease.

Visit the website, find ways you can help, make a difference.

All five of the faces you see at the top of this blog depend on organizations like this to further the progress in research, treatment, and cures for the rare diseases we deal with daily.

Keep the prayers going….

Just click on a link in my Mito Friends blog list and you’ll know the specifics of the prayers needed.

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About Us

I am Heather, married to my high school sweetheart, Michael, for 28 years and we are the proud parents to three amazing young people. Chance is 23, Madison is 20, and Abigail is 18. All three are awesome young people that any mom would be proud of. They are kind, giving, loving, resilient, confident and selfless. They all also deal daily with the effects of Mitochondrial Disease (Mito for short). While they have Mito, they are not defined by it. We welcome you to this exceptional life we lead!!!